A Day in Karen Smoot’s Life: What Living with Pulmonary Fibrosis Looks Like

Karen Smoot's day starts early. Around 6:30 or quarter to seven, she is up. She makes a pot of tea, sits down and listens to the news. Then there is her golden retriever, waiting for her morning walk. They usually go about a mile and a half.

After that, she does small things around the house: watering the plants, clearing up outside, whatever needs doing. 

It sounds ordinary, and that is partly the point.

Karen has lived with pulmonary fibrosis since 2011. Over those years, the shape of her days has changed considerably. But PF has not emptied her days of things to do. Far from it.

She tutors children once or twice a week. She works with a refugee family, helping four girls with their studies. She attends lifelong learning classes, takes part in the World Affairs Council and a women's group, studies her family ancestry, helps people with end-of-life planning and contributes to patient and research activities.

She also helps run an IPF support group, meeting with newly diagnosed patients and helping them find information and resources.

There is a lot going on in Karen's life.

But there is an important difference between who Karen is today and the woman who was diagnosed in 2011. 

She has learned to pace herself.

Finding her own pace

When Karen was diagnosed, she was still working ten- to twelve-hour days. She was used to being busy, moving from one thing to the next and filling her time with work, community activities and everything else that needed to get done.

She had even done triathlons in her sixties. She was accustomed to an active life, and after her diagnosis, one of the challenges was figuring out how to keep that sense of activity while listening to what her body was telling her.

Over time, Karen realized that constantly thinking about what she used to be able to do wasn't where she wanted to put her energy. 

“I have to quit focusing on what I can’t do. I have to focus on what I can do because that will enhance my quality of life.”

That shift has changed the way she approaches her days. She still sets herself things to accomplish, but she has become more attentive to what feels manageable and worthwhile.

There is no sense that she has stopped being active. She has simply become better at choosing where to put her energy, and at recognizing that there is satisfaction in doing something well without pushing herself beyond what her body allows.

“I have to figure out what I can do,” she says, “and be content with that.”

What adapting to PF looks like day to day

That change in perspective shows up in the small details of Karen's everyday life.

Years ago, when she was still working and wearing suits every day, even putting on pantyhose could leave her struggling for breath. These days, she doesn't wear them anymore. She has also found easier ways of doing things around the house, from using smaller, lighter vacuums to taking a break when working in the garden becomes too tiring.

And she has become more comfortable accepting a little help when she needs it.

For years, Karen says, she would have tried to manage on her own if she thought she could. Now, if asking for someone's arm means she can walk safely or keep doing what she wants to do, she'll ask.

“People want to help you,” she says.

It is a simple change, but an important one: finding another way doesn't mean giving something up. Sometimes, it is what allows you to keep going.

PF is part of the routine, not the whole of it

Karen's medical care has its place in her life, but it is only one part of it.

She still drives herself to appointments, including regular visits for pulmonary fibrosis and pulmonary hypertension, as well as appointments with her oncologist, dermatologist and primary care physician. Her medication sits on a small tray on the kitchen counter, where she can see what she needs to take and when. At night, she uses a concentrator in her bedroom and keeps portable oxygen nearby for the times when she needs it, especially after doing something demanding in the yard.

These things are woven into her routine. They don't, however, define it.

Karen lives alone, but she is not on her own. Her son and daughter-in-law are five minutes away, and she knows she has plenty of people she can call if she needs help.

When people ask whether she has a caretaker, she has an answer ready.

“I have 30 or 40 caretakers.”

There is no suggestion that they are constantly checking in on her. They are simply there when she needs them, part of the community that surrounds her.

A life measured differently

Karen has learned to make room for what PF has changed without letting it decide what comes next.

In 2019, after surgery for colon cancer and a diagnosis of pulmonary hypertension, she was told she might have six months to a year. She brought her son to the palliative care appointment because she wanted him to hear the doctors for himself.

That was years ago.

Her grandson, whom she once wondered whether she would see grow up, has since finished school, graduated from college and got married.

Karen doesn't know what lies ahead. She simply continues to make plans, show up for people and look forward to what comes next.

“I’m just going to keep doing things until I can’t do it anymore.”

For Karen, that still means morning walks with her dog, helping her community, learning new things and making plans for what comes next.